Tuesday

Today has definitely been a day of ups and downs! After Rebekah's refluxing incident yesterday, the doctors felt it was in her best interest to do a swallow study and an upper GI. The results? Rebekah is aspirating both thin and thick liquids into her lungs. This rules out bottle feedings for right now, although she is scheduled for another swallow study on Friday. There is a time limit on how long a baby can be under the special machine that allows the doctors to see where the liquid goes when it is swallowed, and the doctors were not able to get a liquid thick enough during their time limit today. On Friday, they will start where they left off today to see if Rebekah will tolerate even thicker liquids. If so, we will thicken her milk and still be able to feed her a bottle. If not, we are looking at going home with a feeding tube for a few weeks or months until Rebekah's body is coordinated enough to not aspirate her feeds.

Isn't she cute???!!

We had actually been warned that aspirating is a common problem for heart babies simply because their body is trying to do so much at once. Rebekah has to breathe with one less lung than you and I, she has to pump blood to her heart and lungs with a heart that is not working correctly, and now we are asking her to suck and swallow at the same time and get it to the right place! The feeding will come; it just may take her body a little time to mature to the point of being able to coordinate all of those functions effortlessly. Until then, we will give her as much help as she needs to eat and grow.

Beautiful Bekah

The other test that was done today was an upper GI. Although it was no surprise to us, the doctors found that Rebekah has a significant amount of reflux. So, in addition to the Reglan and Zantac that were started yesterday to help with her reflux, Rebekah will also be taking Prevacid. I believe the doctors also increased her dosage and/or frequency of Zantac. In spite of all of the results, the doctors still wanted to go ahead with compressed feeds today. So we moved to one hour of feeding and two hours off. That worked great until the third time they tried it. Shortly after the feeding was done (like 5 minutes or less), Rebekah refluxed a small amount. I had just finished cleaning her up and cleaning up her bed when she spit up again, and this time it was everywhere. Head to toe, all over her bed and forceful enough to lose her feeding tube. Her day nurse, Heather, came and helped wipe Rebekah off, but we are waiting for the night nurses to come in and give Rebekah a bath and get her sheets changed.

Rebekah with no tubes!!

It seems that Rebekah is earning a reputation on this floor due to the number of times she has managed to lose her feeding tube in just two days. She managed to pull it out yesterday morning, again this morning, and then it came out again this evening when she spit up. It's kind of nice to see her whole face again, but getting that tube in is not a pleasant experience.

Please remember the Kiersey family in your prayers tonight. Their baby, Avery, whose button is on our side bar, has been having a very tough week. The doctors are out of options to try, and her parents have decided to not put her through any more procedures. They are planning to spend some time with Avery tonight and then remove her from life support. I know they would appreciate your prayers as they hold their little girl for the last time tonight.

Despite all of the ups and downs we have had, we are so thankful for how well Rebekah is doing.

Nancy